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CHEFILEPTIC
by Nate Bennett
EPISODE 11
Welcome back, ye multitudes of mortals. I’m Nate Bennett. This is the eleventh episode of Chefileptic, my autobiographical podcast series.
In this round I’ll describe: seriously-actually-finally-I-really-mean-it-this-time having to stop working, somehow still yet maybe possibly being considered for cyborg status, getting more plugged in than I’d ever imagined, and really sharing what’s on or in or comprising or containing my mind—with science.
If for any reason you find this segment of my series to be worthy of your while, and/or if it happens to make you think of another who maybe might or may, bring it to their attention! I’m sharing it for free, making no money for me, but this also means that they won’t learn of it from ads, spam, pop-ups or any of the other usual gimmicks—oops! I mean, modern and totally honorable capitol-generating advertising methods.
40. the grand hall finale
April, May, and June of 2014 got pretty damn nuts.
At work, I had been transferred back to my original location at College 9-10, the ‘big’ dining hall.
This happened because Amy and I had decided that it was time to ‘officially reveal’ our relationship to our administrators and to Human Resources after we’d gotten engaged. We both knew it would cause yet more ‘inconvenience’, but we also knew we could not keep sneaking around forever, and managers who were in relationships were not supposed to be working at the same locations. We had read our ‘rule books’, written a formal letter, and set the wheels in motion.
We sure didn’t mean to be, but we somehow definitely were officially ‘pains-in-the-ass’.
I missed seeing some of the folks I had been working with back at College 8 (especially Amy!) but it was kind of good to be back at 9-10.
For one thing, it was the big building with all those helpful hiding places—the whole upstairs, which was usually closed at night, the ‘9-Room’ storage closet in the basement, and the empty space under the back stairs.
I was then doing the mid-day shift, so at least part of my day came after most of the daytime-employees on campus had gone home. It was also still the busiest food service facility on the whole campus, so plenty of those I answered to were happy enough to just let me bust ass and leave me well-enough-alone. It was working out fine for a while.
Then, on March 20th at 4:10pm, it all came a-crashin’ down.
I was sitting in the back office when the spell started. I ran down the back stairs to the bottom level and dove under them. I guess somebody must have seen that. Or maybe they saw me unconscious under the steps. Or maybe I was wandering in a post-ictal daze. Either way, someone called 911.
From the time I left the office my memory stopped recording until hours later.
Yet again, I was on a stretcher. I was looking up at a very, very tall guy. I’m tall, and I really notice when someone is like, lots taller than me. This guy was a damn giant, and an angry one at that. I was tied up.
Amy was nearby, there were some nurses and/or orderlies trying to ‘assist’ us somehow, and this guy was pissed. Apparently he had been helping ‘tend’ to me for quite a long time, and at some point I had sort of decided that I had to pee but didn’t want to use the little container I was offered, and now this guy—hospital security—had been ‘managing the situation’.
I finally convinced Amy that I understood that I had to pee in the thingy and we got that taken care of.
Soon after, I was being CAT scanned (more pictures), this time I guess that they were making sure that the large knot on my left temple that I had somehow picked up didn’t cause (yet more) damage.
Throughout everything else we did at the hospital that night, the big security guy was there to make sure all was cool. I don’t think I ever saw him smile. I realized that I’m probably one of the suckiest parts of his job. I’m sure plenty about working the ER is a drag—sorry about that, to all you great emergency room workers out there. I never meant to make your jobs any worse.
I learned later that apparently, the team of paramedics found that I was ‘difficult’ to load into the ambulance (partially conscious and post-ictal and muttering nonsense and all that stuff once again), so they gave me a small dose of one of my regular medications (carbamezapine), which I guess they were hoping would settle my ass down, or maybe even knock me out. I was super-tolerant to the stuff already, though. Apparently, it didn’t make me behave, and I next became ‘combative’.
At some point they’d decided to give me even more of it–with more and worsening results. Next, they busted out with some Adderrall (apparently that’s a salad of several kinds of amphetamines, used sometimes for ADHD and narcolepsy). It had clearly brought them no positive results.
During the transferring and handling was when I picked up the clunk on my head as well as several smaller injuries, like the bruises shaped like a large handprint on my back.
If you recall, campus paramedics were called to that exact same location the first time they’d been dispatched to deal with me back in February of 2009, when I supposedly had ‘taken a swing’ at a female EMT, and five emergency vehicles had been sent to assist. I probably would have smacked me on the back too, at a minimum. Maybe that same female did it. I hope so, I had it coming.
I guess that right after 911 was called, someone had called Amy and she had rushed over from College 8. Once I’d finally been wrapped up and stuffed in the ambulance, she’d jumped in her car and chased it…through all the red lights that the ambulance had busted on through to get to the hospital! They used their loudspeakers and shouted “quit following us” at her, all the way to good ol’ Dominican Hospital—7.2 miles away.
True love, I tell ya.
Anyways, after this round, I did not return to work at UCSC Dining.
41. coincidal
Five days later, on Monday March 25th, Dr. Bhattacharya and I met to discuss this episode. He told me that he had realized that he could no longer approve me to work (including in volunteer situations), because we could not be sure what might happen in regard to both my behavior during episodes, and to my memory following them. Clearly, working could endanger not only my own safety, but also the safety of others.
It would not be the last time I would end up hearing this from my doctors.
Our meeting also led right into another freaky aligning of events that seemed like it must somehow ‘mean something’.
I got a voicemail a little later that same day from Dr. Graber over at Stanford. I know because I saved it, literally, for a couple years… not to sound creepy or anything, I just somehow kept not erasing it; maybe holding out hope that fate had something to do with it.
He’d told me in his message that he had called to let me know that they had “some new options available that weren’t available when they had me in the hospital last fall”, and that in this context, he had asked that my case be discussed with their group again that day–and he now had some ‘new recommendations’ for me to consider.
I remember at first it was kind of shock-yet-awe… and when I listened to the message my mind went a-running and a-jumping into my own personal realm of conspiracy-land.
For one thing, was this connected to my recent visit to the ER, or maybe even put in motion by the appointment I had just had with Dr. Bhattacharya? I mean, I was pretty sure Dr. B would tell me if he was going to contact Stanford…
The timing was just plain bizarre, and that’s all there was to it.
I had been told when I’d left Stanford the previous fall, that the next possible FDA approval of a new device that could possibly help me might be around two years away. It turned out, though, that a new pacemaker-like device had been approved surprisingly quickly, about a month after my Phase 2 at Stanford had ended. And now, apparently after some discussion, the Stanford team thought I just might be a candidate.
When I called Dr. Graber back, I realized that it was just a pure coincidence that he had called me up on the same day I found out I had to quit working. Nobody could have planned such a thing.
I think I might have always been just a little paranoid since I’d first gotten surprised by that very first letter from the DMV suspending my driver’s license after I was taken to the ER that first time back in ’99. It’s like I expect medicine and government to have yet more layers of hidden connections all the time as I creep along through this crazy maze.
Despite my tripping about the timing, it actually was good news. It meant that there still might be hope, and it showed up at just the right time.
42. the big house
When I spoke with Dr. Graber, I agreed to come back to Stanford for another round of consultation, this time involving several appointments with several doctors.
Thing was, it was going to take like a month to get things lined up and to wait my turn in line and all that. In the meantime, plenty of other stuff was going on to keep me tripping.
For one thing, things weren’t going well in my roommate-relationship with Tim Gard. At some point that spring, I had told him that Amy and I were engaged, and I planned to move out about five months later. He already was pretty nervy, and on-edge for his own totally understandable list of reasons. I know he was, shall we say, annoyed by how often Amy was my guest, but when I had this discussion with him, he was real mad. He’d always been a really sharp and reasonable person, but during this period he seemed to be slipping into almost illogical anger. I wrote him a letter at some point that was like, ‘hey—we don’t have to end our friendship as enemies’. I’d never had wanted him, or anybody for that matter, to have any reason to hate me.
Well, as I came to learn from him later, he did have his own struggles going on that did have an impact on him. His Multiples Sclerosis was progressing in spite of his medication and routine efforts, and he was in more and more pain, which he usually kept to himself. He was having more and more bouts of migraine-like headaches that lasted up to days on end. He admitted to me that all of this contributed to his hot temper and anger-level. At some point, some of that anger had come my way, though I might not have deserved all that was dished out.
Either way, he was moving out asap. It was going to hurt me financially, because the place was really too big for just me to afford, but I wasn’t going to look for a place to move just then if I was about to get brain surgery, possibly as soon as within a few months.
So, he moved to Vegas to hang out with a buddy of his that had just bought a place there. And I now had a really nice, too big, too expensive-assed house with a two-car garage, and I didn’t even have a car. I really had no one to blame and no reason to waste energy doing so; I just had to ‘hang in there’ until the surgery, if I was going to have it at all, that is.
I could almost hear the slurping sound of my savings getting sucked dry throughout that spring and summer, but I was glad to have a solid, nice, clean place to recover in.
On the last day of March, eleven days after the episode that had killed my job, I had another grand mal in the early morning as I awoke and it lasted around thirty seconds, according to the journal. Amy said that it was followed by a short ‘post-ictal’ phase. I’d yet again bitten my tongue and once again, I’d lost some blood on my pillowcase.
My first consultation with Stanford about the possible ‘big procedure’ was over a month away, so at that point, I just had to stay alive and sane enough to fill out the first waves of insurance and medical and disability-related paperwork.
My music gear was all kind of spread out and sitting around but I hadn’t really done any kind of meaningful work since the last project had come out, about a year before. I was having more and more difficulty being able to get through tunes when I’d try to play them, and I wasn’t inspired to start another project until I knew what was going to happen. I’d pick up an instrument, tinker with it for a few, get frustrated, and put it down.
I was being told that I couldn’t do what I had always done for money, but these instruments had never paid me either, so it seemed like I couldn’t justify the effort and time to once again re-teach myself these skills that I was yet again watching disappear.
On the 15th of April I had several grand mals. They began during sleep in the early morning, like they usually did at that point. I’d woken up early, and I was very sweaty. I had to vomit. I went to the bathroom and began a cycle of vomiting and seizing over and over. Amy found me on the floor by the toilet, with my head bleeding (apparently, I had once again hit it on the side of the toilet—a personal classic).
She got me to go back to bed and I applied the Diastat (the butt-meds) for the first (and fortunately, so far, the last) time, and then I passed out for several hours. When I woke up, both sides of tongue were bitten, causing holes and flaps in it, and my entire lower body was super-stiff—lots of cracking when I moved and walked that lasted into the next day. Man, that shit had just plain knocked me out cold. I pretty much slept for the rest of that day, feeling like I had the worst hangover since I first drank warm peach schnapps and whisky in the woods with my best buddy Jeremy McKay when I was like fifteen. I wasn’t going to use that stuff again unless I really had to, but man it had done its job.
Six days later, I had another grand mal. I had gotten up early that day, as I had been moving around my sleep schedule to a pattern to line up with Amy’s summer work shift changes. I felt normal at first, but then began to feel nauseated, and started to vomit repeatedly. I tried to take my pills at the regular time, but they came right back up, partially dissolved. After a few minutes, I decided to take another half-dose of my meds because I was sure I had lost most of the morning dose. I then took a nap and awoke with more of the tell-tale bites on my tongue. Vomiting finally stopped in the afternoon.
After some investigation I realized I had eaten really old frozen turkey the night before that did not have a date on it. I threw away the remaining amount of the turkey that I still had in my freezer, and then began to write dates on all foods whenever I decided to freeze anything. Duh. I had been paid to do that for like 28 years, and now I couldn’t count on my own memory well enough to know how old various leftovers in my freezer were just by looking at them. Time to manage myself better.
The journal shows another seizure eight days later, but the details are missing. I lived.
43. consultation time
On May 6th, 2014 Amy and I had our ‘big day’ of consultation.
We headed back on up to Stanford for several chats with several experts. These were the doctors that would be handling the next surgery… should I choose to proceed with it.
We got to ask every rambling and frightened-sounding question we could come up with. Don’t get me at all wrong, I’m real proud of both of us overall, considering the flood of heavy info we swam through together that day. We had prepared every question we could think of to bring, but it was still hard to feel ready for it. No matter how well we had prepared our notes and questions, we were bound to leave that day feeling like we should have thought to ask something else.
It seemed to go by relatively easily, but yet, of course, it managed to be just what it had to be–a prelude to the next round of serious and very real tests to come.
Well, we spent a good long but solid Tuesday first meeting with Dr. Jamie Henderson (Stereotactic and Functional Neurosurgery Specialist), next with Dr. Lawrence Shuer (Neurosurgeon and Professor of Neurology), and finally with my main man at Stanford, Dr. Kevin Graber, and we now had our official ‘game plan’ put together.
The Phase 2 round had shown the doctors the general area of my problem, but now I would basically have to do the same kind of test all over again–only this time, we would be going in with a complex ‘seizure mapping’ procedure to kick off the next round of fun. The team needed to get more ‘exact’ information so it could decide, first of all, if I would be able to successfully use the new inter-cranial product, which goes by the brand-name Neuropace.
Apparently, the collected data had narrowed down the problem region to three basic areas—two of which were operable and one which was not, because operating in that part could cause strokes. For this reason, there was a two-out-of-three chance that I would be able to proceed to the next step: ‘resection’.
The working theory was that one of the three problem areas was likely to be the real root of the problem; it was acting like a ‘bully’ that ‘bullies’ the two other unstable regions into being it’s ‘helpers’ when I started to seize. Depending on which was doing what, the first step would ideally be to remove the ‘problem child’ from the scene completely, and hopefully then ‘re-train’ the other areas into ‘behaving right’, with the help of the new device.
In order to gather this needed data, on June 5th I’d be opened up to expose the left hemisphere—I don’t think I’ll ever forget hearing Dr. Graber say that they were going to “carve me like a pumpkin” (now that was a visual I could work with). A circle would be cut out of the left side of my skull, and while the piece was out, several seizure-sniffing devices would be implanted directly. This would include a series of mesh nets that would be laid across the surface of the hemisphere, and several bundles of sensor-wires that would be implanted in the deeper region. The electrical activity that all these sensor-wires detected would be entirely recorded until the data we needed was finally collected.
Next, I would be temporarily ‘stapled’ shut, and again I’d be strapped into the bed and observed until I had seizures, which we would trigger as we had done in the two previous phases. With this first stage, we would be ‘mapping’ the seizures out more clearly than we ever had before, so the doctors would be able to pinpoint down to the millimeter exactly what part of the junk was bunk.
The adventure would ideally culminate with the resection and the implanting of the new machine in the big final surgery. After that, it would be all about the recovery. Hopefully the seizures would stop completely; either way, I’d have to expect to take the medication for the rest of my life. I already had heard that one plenty of times along the way, so it was no big adjustment.
As far as the direct impacts of the resection, Dr. Graber explained that if all went well with it, I may have some migraines and or double-vision for a couple of weeks while I healed, but I would (hopefully) return to ‘normal’, though I might lose the ability to smell with my right nostril. I was like “you mean you could maybe stop the seizures and all I’ve got to give up is smelling on one side? LET’S ROLL WITH THIS!”. I already knew I might lose some sensing ability, and I had been thinking I’d maybe see or hear worse as a possible outcome, so that was some reassuring news to get.
Don’t get me wrong—I like to smell and all, but I really dig hearing in stereo.
44. the neuro-place
Now the part about Neuropace.
Alas, my own creative writing prophecies about machines (and our dependence on them) were slated to be self-fulfilled, as I was now set up to become a genuine cyborg. My new working symbiosis would include this freshly-approved two-part gizmo—one part designed for sensing and tracking seizures, and the other part designed to shock ‘em and stop ‘em.
A ‘window’ would get cut in my skull on the upper left side, about half-way back, where a hearing-aid-sized unit would be implanted, and then the skin would be sewn shut over top of it.
One of the internal parts looked kind of like the round-faced dial-type food thermometers I had used at work for years. It was to go in kind of laying under the left hemisphere of the brain. The other part was a strap that would circle up over the surface of the left side of the brain. The strap had several ‘nodes’ on it, so the unit could be adjusted somewhat to ‘focus in’ on what area would be shocked, and the amount of ‘juice’ the contraption would deploy was also adjustable.
Ideally, what would occur during a seizure is that the unit would at first sense it starting up, and then it would shock my brain to ‘bitch-slap it’ into not having the full-sized seizure–possibly entirely doing so without me even knowing it had happened.
The other benefit (and really the most solidly proven of all the possible positive functions) is that Neuropace would be recording all of any activity, and this data would be reported in a weekly upload to my doctor, so that the unit (and/or my meds or my routines) could be adjusted to more ‘specifically fit’ the seizures themselves.
So, put another way–if after all of this next adventure I was still having seizures, we would still get the ‘data’ from this unit that could help point out other important matters, like if I’m having them while sleeping but not knowing it, or if something I’m eating messes with me, or if I need to do more or less of whatever activity at whenever times of day, you name it… so really that info is conceivably very good stuff to have to work with.
I was also glad to know that Dr. Henderson was part of the team that had actually designed the unit, and when Amy and I had met with him, it was clear to me that he was proud of this revolutionary design, and he had strong confidence in its success.
At that point there were only about 200 ‘test-bunny’ patients out there with working forms of the device, and the oldest working unit was only seven years running, so there was no real data to work with to see the long term effects of the system–but hopefully we wouldn’t be leaving it in place longer than around six years. Ideally, by then we would have tracked and trained the remaining good parts of my noggin into stepping right in time, so it was actually supposedly not likely to be left in place longer than that.
Also, it would contain a battery that would need to be changed about every 1½ to 2 years, depending on how often I was being shocked, and changing it would require a ‘light’ surgery (just a quick drop-in for a numb, slice, replace, and stitch-up), but eventually, that would cause scar tissue-issues, so Dr. Henderson felt we could only probably get three battery-swaps before we’d need to take ‘the next step’ (whatever that would turn out to be).
The Neuropace came with an interesting ‘care and feeding’ list. For one thing, I would have to avoid MRI’s and metal detectors, both of which could cause potentially damaging effects including triggering seizures. This apparently meant that if I wanted to travel by air at any point, I’d have to make an appointment to meet an official at any airport I wanted to travel through with special paperwork that proved I was the ‘real deal’ and not a bomb-carting terrorist. There were already such mechanisms in place, so I wouldn’t be the first and only person with such restrictions, but when it came to travel, I would just have to plan ahead.
Next, I’d have to carry a laptop that I would be provided with for the ‘uploading’ of the Neuropace data on a weekly basis. This laptop would have to be plugged into a landline, because this was private medical data that could not be sent via any wireless method–just in case the spies were listening in.
I remember asking Dr. Henderson, after we had discussed all of this, how many Neuropace implants he had been a part of. He smiled and told us that I would be the first for both him and for Stanford Neurology. I said something like, “no offense, but has any other facility done more of them?”. He explained that at that point Kansas had a facility that had done five of them, but if I wanted to go there, I’d probably have to shell out a lot more dough because it was out-of-state. I was totally fine with not going to Kansas for the procedure. If anyone knew about this machine, it was this guy. And I would be proud to be the first recipient of the device at Stanford. Actually, I was honored to be considered for this cutting-edge procedure.
One of the main insights that sealed mine and Amy’s decision to go ahead with the next phase was when we asked Dr. Graber during our consultation about the more ‘blunt’ stats regarding the possible outcomes–and he told us that all of the entire list of surgical procedures this upcoming fest would involve, along with everything else we had done so far at Stanford, stacked up to be statistically less dangerous than just ONE of my seizures.
So that spelled out why I was such a ‘special’ case, and why we all needed to take action asap… while we still could.
45. Stanford’s study, Phase 3
Amy brought me back to Stanford for Phase 3 on Thursday June 5, 2014. Wow, not that long ago… a bit over a half-dozen years back from the time of this writing. Seems like so much longer now.
Dr. Graber had told me that I would likely have my memory from the year around the surgery kind of ‘swirled up’. I might not lose all of it permanently, but I’d probably find that my memories from that time would be cloudier than at other times in my history, even after I had recovered.
I wasn’t too surprised. I’d already found that (as I’ve mentioned before) stretches of time when I’d had a higher frequency of seizures are harder for me to remember anyways, so I was kind of expecting to hear this. Thankfully, I now had Amy to help me all the time. I can’t say how many of these details would have ever found their way to this memoir without her telling me what happened after-the-fact.
The first surgery of Phase 3 happened the next day at 5am.
I remember waiting for a while, strapped to the bed, then getting wheeled into the operating room. I couldn’t really make out who-was-who before I was knocked right out, and when I woke up I was back on the stretcher, wrapped up in my back brace, with my hands tied and another big turban of bandages wrapped around my head.
As I understand it, the surgery had taken about five hours, with a team of four or five doctors working together. It was explained to me that during the procedure I had some ‘abnormal’ brain activity that caused the doctors to decide that they needed to put in a significantly larger number of probes in the left side of my brain than what initially had been planned.
My memory afterward began in the recovery area. It was kind of a humble-feeling place to be. There were a number of other patients recovering from their own surgeries on beds nearby.
I was spacey as I came out of the anesthesia. I was doing ok at first, but then I kicked into seizure-mode. I had convulsions that lasted four or five minutes, and I was loopy for a while afterwards. It was kind of a bummer, because all the fancy wires that had just been implanted during the surgery weren’t hooked up to any kind of data-recording devices yet, so we missed being able to record that one.
A pretty funny experience came out of it though.
As I came around, I first realized that I’d had a seizure because I’d bitten my tongue. As I put that together, there was now some really bad singing going on. It was coming from another patient that was out of my view–a female that I would estimate as being maybe 60 or older. Her voice, to me, sounded like she was maybe a large lady, but you never know. Either way, she was in a delirium. She was singing mostly in English, but she threw in a few Spanish words here and there… it was a really ‘free-form-straight-from-nowhere’ kind of performance, and it was driving the staff and other patients nuts (I could just tell). Other patients were starting to say “shut up, lady!” and complain to the nurses who were apologizing that there was nowhere else they could put her.
But that wasn’t the funny part.
I was getting relatively back to ‘me-world’ again when a nurse came up to check on me with her clipboard in hand. She was short, her face and head were all covered up, and her accent sounded like she might have been Philippino. She said “do you know where you are?”.
So, naturally, I answered “I’m in the jungle, baby!”.
I mean, the room needed a little humor, and even with her face-mask on it looked to me like the nurse was probably born somewhere within a million years of either direction of me, so I figured she would know it was a fucking Guns n’ Roses reference. I mean, come on. Appetite for Destruction. She looked at me blankly and checked something on her clipboard and walked away.
Well, I happened to look over at some paperwork that was hanging nearby me a while later, and apparently she had marked on my chart that I was ‘still delirious from the seizure’ when I gave her that answer (which was like over an hour after I was totally fine). I was glad I noticed that–I pointed it out to someone and the paperwork was adjusted by somebody that actually did get a smile out of it.
I’m sure that humor can be hard to come by in a scene like that.
I was returned to the same room I’d done time in for the last phase, tied in my bed with my hands restrained once again so that when I did my thing I (hopefully) wouldn’t be able to start ripping stuff out.
I now had something like 120 leads coming out of my head leading into the ‘seizure mapping’ apparatus which was constantly recording my brain activity. I had to agree to stay in bed, fully restrained, until this part of the procedure ended, to keep myself safe. I also had a pulse monitor on one finger and an IV apparatus in my right arm (which had been moved around to several different spots since the first surgery to ‘mix things up’ a bit). I also had a few tabs taped on my body in a few odd spots, but at least the pain wasn’t terrible. I was on some heavy dope at first, but they weaned it down pretty quickly.
Turns out, there’s really not lots of pain-sensing nerves in your scalp, and none in your brain. Many of my past seizures had caused me worse pain for sure.
Just like both of my previous stays, it took a while to have a good seizure for them once I was all hooked up, even with all those wires stuck in my brain.
The second surgery had originally been planned for June 12th, which was a week after the first one. As I’d learned, certain types of surgeries were only performed on certain days, and apparently the ‘hot days’ to get my variety were on Mondays and Thursdays. However, it would also take time to analyze all the data that they would collect from a seizure before the surgery could be done, so there was a ‘cutoff point’, and if I didn’t’ ‘flip out’ soon enough, I’d have to wait around to ‘catch the next boat’.
I almost made it.
At 7:20am Tuesday morning I had convulsions that lasted about seven minutes, followed by a post-ictal period that lasted about ten minutes. This seizure was the one that provided the essential data needed by the team so they could decide how they would proceed. During it, I somehow managed to reach up (despite the straps) and pull one of the implanted wires out of my skull. Apparently though, the needed data was collected. It didn’t appear that I’d caused extensive injury, but this did mean, however, that I’d have to be ‘observed’ for related damage during the rest of my stay.
And because they didn’t have enough time to analyze the data collected during the seizure before the surgery planned for that Thursday, it would now be pushed back until maybe the next Monday, or possibly even the next Thursday. Delays caused by situations like this could cause the operation schedule to get backed up a little here and there, so I’d just have to stay wired-up and waiting.
At first, I have to admit I had a little concern about what might have resulted from my pulling out one of the wires as I seized. Had I caused bleeding? Had any fragments of it stayed behind?
Soon all worries were put to rest. One of the most important (yet for me, least seen) doctors on my ‘team’ was Dr. Lawrence Shuer—basically, he was the ‘main’ surgeon who would actually be handling most of the direct parts of my procedures at Stanford. I’d met him a few times, and he was a nice guy, but kind of a ‘man of few words’. I saw him as kind of being the ‘man behind the scenes’ who would actually have his fingers in my head, but he wasn’t really in the ‘customer service’ end of things. This was fine with me—he could use whatever words he needed to when I was knocked out; I trusted his skills, and didn’t need to have tea and cookies with the guy.
He came by my room the morning after the seizure. Naturally, I asked him first about the wire.
I remember him making a barely-noticeable smile, and just saying “I got my data”.
I busted out laughing. This was one of those guys who could have made a whole room erupt at a joke he’d just cracked as he calmly sipped his drink. I mean, as long as he got his fucking data, all was good, right? His visit and short answer totally put me at ease. One tiny wire wasn’t going to hurt shit, we had gotten what we came for (the data), and now we could take the next steps.
My Mom, Laura, and my sister, Emily, had arrived from Albuquerque on Wednesday, the day after I had that seizure. The plan had been that they’d visit as I’d be on my way out of Stanford, so that they could help me get on my feet, (literally), depending on the outcome of the surgical adventure. They settled in at my too-big and mostly-empty house, all ready to help take care of me, and they then began driving daily from Santa Cruz up to Stanford to see me.
To see them both there, as I was in this totally strapped in and wired-up state, was a little eerie I have to admit. I mean, when I thought back about it, looking up from a hospital bed you can’t get up from at the faces of close relatives who may have traveled whatever great distances to be at your bedside would usually cause most people to think they were in a real life-and-death kind of situation.
They both ended up doing a great job of hanging out and comforting and reassuring me for many hours. They also did a pretty darn good job of not looking worried and getting all frantic and high-drama too much, I have to admit. I did feel kind of bad later on, though, that I had the doctors give me news ‘on-the-level’ as usual, and that might have been kind of tough for my mom and sis to hear. They were just so solid that maybe I had taken their strength for granted, so they got to hear the ‘real deal’ right as I did when they were in the room. I gotta admit, if I was in their situation, that direct-from-the-doctor honesty would likely have freaked me out.
They were strong though, just like Amy was.
Amy had also been coming up to see me often since I checked in, usually at night. That same room became the setting where I was able to first introduce my (future) wife to her (future) mother and sister.
I would’ve preferred that it could have been at a more relaxed and enjoyable setting, like by a nice pond at the trellis with some doves flying by or something, but it really worked out pretty well. It was hard to imagine what they all were seeing when they looked at me, and I had to not let myself wonder too much about what they all might have been wondering about. I just had to be myself, and myself is positive. And I was positively glad to introduce Amy to Mom and Emily. Amy had so far met most of my family, except for my Mom and Sis and bro Bryan and Step-Dad Gary.
Well, nice to introduce you all in this crazy hospital reality-plane and everything… and glad to do so.
I’d like to have been able to ‘entertain’ them all in a more relaxed sitch, but hey, it was a real pleasure to finally get those hugs around and do a little ‘hospital bonding’, you know?
Within the next couple of days, Aunt Pat (from Sonoma) had also come down for a stay with Mom and Em at my house. She had already met Amy back at that family Thanksgiving get-together. They all hung out with me a bit and they had a day together in Santa Cruz going thrift-shopping and then having a nice dinner at a fancy restaurant on the beach. I was real glad that they were all hanging out together. I was enjoying seeing them but I was also kind of tired out too, somehow, in spite of doing literally almost nothing physically strenuous for days, which turned out to be a number of days, because at some point I ended up getting word that the final surgery wouldn’t happen until Thursday the 20th—fifteen days after I’d checked in for that round.
During that third phase I got to work with some more researchers that kept the whole experience more interesting. Hopefully, I was an interesting and useful test-subject for them.
On that first Monday morning I met Sandra (a student of Dr. Parvizi). She’d brought a bunch of computer equipment into my room to monitor me with during several kinds of tests that were pretty neato. She came back during the daytimes each day and observed and recorded my brain activity during a number of tests.
One of the experiments I was tested with was smelling cotton balls that were saturated with various aromas. Other tests were memory and reaction-time related.
She also brought two German exchange-students named Christian and Elaine, who tested me with several types of tasks that were pretty cool as well, including a ‘gambling’ kind of test where I had to quickly choose which way to split a ‘jackpot’ with another (imaginary) person, based on maximizing a ‘payout’ for myself repeatedly. Another was a ‘shapes-related’ memory/reaction test, where I had to quickly respond to flashing pairs of colored polygons, and finally there was a “musical expectancy” test, where I listened to short pieces of piano music (by Bach), and I was asked to ‘rate’ the pieces on a scale of 1 to 6 based on how well I thought the final chords ‘concluded’ the pieces. I recall that they also had an array of treats, and I got to choose from them as a ‘reward’, a reaction which was also observed.
Friday, Sandra came back to take the equipment out of my room, and told me it had been a real pleasure to have my help with this area of research. I told her I was glad to be of service, and hoped we could all contribute to expanding the overall understanding of this disorder. Plus, I was still eating those treats I had been rewarded with: yummy kinds of nuts and dried fruits and good chocolate-type stuff.
I don’t know how exactly the data collected from me will be applied, or specifically how I may have contributed to the world of science, but I was again glad to be utilized for any brain-function related research that could potentially help doctors map and treat seizures, and to assist with any expansion of our understanding of how the brain works. Clearly all of the students that worked with me were on the ‘cutting edge’ of this area of medicine, and I was pleased to be able to contribute something to all of their efforts.
Sources Cited:
Guns N’ Roses (1987). Welcome to the Jungle [Song]. On Appetite for Destruction [Album]. Geffen Records.